October 2015 prayer request

Katie is in kindergarten!! I still can't believe it! She is doing amazing! She has an aide that helps her as she writes and school in general. She still needs prayers because when she writes/copies it requires so much visual focus and fine motor precision that she tries to shut down and quit.  It has to be exhausting to focus so hard and still have it be so difficult with these as her two weakest areas. But her teacher and aide are challenging her and so far she is able to fight through. Pray it becomes easier and that she continues to comply! 

Also please continue to pray for her weight. I am continually concerned with her weight. We walk home from school everyday (just over 1/2 mile) and she is in PE 3 days a week and swim lessons. She plays hard and continually eats less than normal children. She is eating more fruits and vegetables. But she continues to gain significant weight. It hurts that I can't fix it. But Katie knows no difference. I can barely afford to keep buying her bigger sizes.  But I thank God she is happy and healthy overall! Please continue to pray that she stays seizure free. Her weight gain slowed when we lowered her seizure meds, but I do seem to think the big trigger is her brain damage. Please pray for her body and brain to slow its weight gain and that puberty waits for several more years as prepubescent puberty is common with brain injuries as well. 

But continue to give thanks for her cognitive ability and her overall amazingness!! I never thought I'd be doing regular kindergarten homework with her. I wouldn't thought she'd master letters and sounds by beginning of kindergarten. She could barely write her name this time last year. 

Katie is God's miracle! Her therapists, teachers, aides and family and friends have helped her in millions of ways, but God gets the glory! 

Thank you Lord!! 

Newest prayer request

So, this is one of the harder prayer request to share. I guess because most of Katie's ailments and struggles I simply do my best and I could never be considered at fault. Yet when it comes to her weight I feel I could carry responsibility and it seems more personal. But I have improved her diet and watched her activity level. I am confident in my efforts that her weight gain is not because of me and outside circumstances. She eats significantly less calories than her age and activity level require. Something within her body is off and we've started a string of blood tests to start investigating.  We are not ruling out her seizure meds, but since she has been on the meds for two years and the weigh gain only started last April we are looking at hormones and internal stuff and ruling everything out. All basic blood tests are within a healthy range. She is doing great overall! But her weigh gain is rising dangerously quick and I won't wait it out any longer. I can tell her stamina is dropping as her weigh rises. Her pediatrician is amazing and calls me to discuss her and calls other doctors for advice. After her blood tests results come in next week we will continue to dig deeper. 

Thanks for praying!! 

Prayer Requests September 2014

Today's prayer requests- continued improved vision- she is no longer legally blind (Thank you God for answered prayers!) yet still can't consistently see far away, it takes a lot of focus and concentration to watch tv from the couch and watch shows or parades or observe life in distances of 20plus feet. 

Her left hand- seeing it every day it is hard to see the improvements, but last year she had to concentrate so hard to open and close her hand, if she worked it too hard, releasing her grasp on something would be a fight. She is using her left hand without hesitation now. We accept she may not have fine motor control with her left, but we also know with confidence that God has granted us many requests, so pray that her hand continues to gain strength and control and functionality. 

Attitude- she can be extremely difficult to work with in school and therapy and home. If she doesn't want to do something whether it is therapeutic or necessary she can throw a tantrum to end all tantrums. We have learned to pick battles worth fighting over. So please pray for more cognitive reasoning skills of what is good and necessary. Simple things like brushing teeth can become a battle of 5-10 minutes of screaming, crying and restraint for 30 seconds of the toothbrush in mouth. Getting ready for kindergarten will need to be more smooth as well as assignments in kindergarten next year can't be fought tooth and nail. (Her sweetness and joy far outweigh her serious feistiness, but her lack of being able to reason with is becoming more problematic.)

Her cognition and school readiness- nothing to worry about yet, but prayers appreciated.  With hundreds of therapies appts and a year and a half of school Katie can't successfully write her name. A few letters are staring to emerge. Even tracing her name is so difficult she shuts down quickly. She has immaturity in general and with social skills and understanding. She is a leader without a doubt, but needs to have some flexibility and openness while playing with other 4-5 year olds. She screams, pouts, hits and fights with anyone who doesn't want to play the way she does. I want her to be her and I want to respect her love of attention, direction and leadership, but reality is to be a good friend requires compassion, mutual respect, compromise and understanding. 

Her swim lessons have made leaps and bounds in the last 9 months. She went from crying and screaming in the water to swimming. Yes my daughter is starting to doggy paddle. For most 4 year olds a 2 week class would teach them the basics and  maybe within 2-6 weeks they could swim as proficiently as Katie has learned in 9 months. But for Katie with her left sided weakness she has to seriously focus and think about using her left side. With the amount of concentration and exertion she does while swimming her left side wants to posture and lock up stiff as a board. She has to fight against her own body to move especially her left arm. But she can swim several feet, but she has to focus and work very hard. Pray that she can continue to improve and that swimming becomes more fluid and natural. Pray that she becomes truly and consistently water safe and that her strength and coordination flows over into other areas. 

Katie almost 4 and a half years old!!

                   It has been way too long since I have written an update! In general that is a good thing because there is no outstanding reason for prayer. Yet, I have meant to write since she turned 4 years old in January.  Well, here is the very latest.
      Katie has met most of her goals for the last year. She is doing well at school and in therapy. We do believe that the virus that she had in November 2012 was a polio-like virus that has re-damaged her left side extremities. Her left leg has regained strength and is doing great! She will have a different gait, but she has no problems with tripping regularly any more. Her left foot and toes have not regained as much strength, but haven't been a problem unless putting on boots because she can not lift or wiggle her left toes. Her left hand has never returned to where she was before she got sick.  Katie can not supinate her hand (put her palm up) and has poor control over her left fingers and thumb. The lack of improvement is discouraging after over a year and a half of multiple therapies per week. So, we are accepting that her arm may never return to full functionality, but we will continue to work hard, encourage use, and pray for full function. 
Katie's cognition is age appropriate and she has another year of growth before she enters kindergarten. Her neurologist and neurosurgeon are impressed with her growth of speech and cognition. They said keep up the good work and therapies. She has being seizure free for a year and Dr. Gurbani said that it is 80% of the journey. Now the next 2 years are the last 20% before she is weaned off her medicine. Yay!
Katie's social skills could use some prayer as she continues to learn how to play well with others especially when they don't want to play what or how she wants. 
Katie has been taking swim lessons since the beginning of the year. They are going great! The latest lesson has been to doggie paddle which is extremely difficult with her left arm, but she is doing great and working hard!  She has an amazing group of instructors at Fast Swim School in Fullerton. They teach her, coach her and love her! They go above and beyond to learn how to adapt to her disabilities and make lessons about swimming and therapy. Pray for continued growth and strength!
She enjoyed her horse back riding lessons she received for her birthday! She was extremely stubborn at times for her exercises, but overall enjoyed the horse and riding.
Katie's vision has seemed to be improving. Keep praying!! It is amazing to be overwhelmed when she points out Johnny's old pre-school while we are driving. Something so simple is so wonderful!! We see her ophthalmologist on Monday to get an idea where her vision is now, so I will have another update in a week.
My day care business is doing wonderful with life-long customers and friends and word of mouth customers. I am full and as busy as can be! This is great overall, but it has been hard as I can no longer take Katie to her therapies. But I am extremely thankful for my dad who has made everything possible since his retirement! (Thanks Dad!!)  This is hard on my heart, but I am overwhelmed with amazement for her progress. My eyes fill with tears when I watch her run, jump, climb, swim and live life with such joy! Thankfulness overflows in to every corner of her being, her life and our family's lives!

Our current prayer request comes from our Friday visit with the orthopedic doctor Dr. Lau. It is usually an uneventful appointment. He looks at her left hand, watches her walk with and without the brace and says keep up therapies and wear the brace often. But Friday he brought up something new. Dr. Lau referred Katie to a hand surgeon to look into if Katie is a candidate for surgery that would improve her left hand's ability to supinate. Fear is our initial reaction, but I agree after a year and a half of therapy other means may need to be considered. So, we have a consultation on Wednesday with the hand surgeon and will know more after that. Pray for wisdom all around, for us and doctors, and what is best!
    But lastly I have to share my God moment from today. At a birthday party another parent, I had never met before, struck up a conversation about how fearless Katie is.  Since her awkwardness stands out to me I told him she has cerebral palsy and that she is an active brave girl. He tells me he knew she had cerebral palsy and continues to tell me a frighteningly similar story to Katie's.  He has cerebral palsy affecting his right side from lack of oxygen at birth. Then at around 5 he had a fever that worsened his right side and he eventually had surgery to improve his supination on his right hand.  I started to tear up as I told him that our Dr. had suggested that surgery yesterday.  He said that the surgery made a significant difference in his life. He is a dad of 3 kids, fully functioning and only after he told me could I see little indicators of cerebral palsy. So, that God moment will never be forgotten especially as we meet with the hand surgeon. Please continue to pray for wisdom and direction! Pray for Katie's left side and vision! Pray for all of us too!  Yet never forget to give thanks for her progress and her joy and Katie herself!!  Thank you!!  Thank you!! Your prayers have made a difference! My thankfulness can never be expressed enough!! Thank you!!

The results of today's visit

The results of today's visit

We finally got an idea of where Katie's vision stands. At first she seemed to be uncooperative, but they started with smaller pictures and when she was cooperating she couldn't identify them, so she wasn't uncooperative, but she simply couldn't answer. Her vision is less than I expected, but I guess it is where I have observed it. She has trouble seeing across the classroom. If she is in unfamiliar environment her vision can be less. If there is too much sensory (people, chaos, noise, lights) then her vision can be less.

    Her vision was measured at 20/125. This measurement may not be totally accurate, but from what we see it probably is. Her vision should not get worse, it MAY get better, but it may stay the same. At 20/125 it is at is the line of legally blind. So, not the best news parents want to hear. We are thankful for her, her progress, and every other area of amazingness! She is leaps and bounds above where she "should be" with severe brain damage. So, what do we do- PRAY, PRAY, PRAY, and let her view the TV, phone, book, papers, ect from as close as she needs to, and maybe some large print at school. There is not much more humanly possible. 

Pray specifically for her vision to improve and for new pathways to be made in her brain for her vision. 

I have seen the miracle of prayer happen with Katie, so please please keep praying. Her brain (and therefore vision) can improve and make new connections and pathways for another 2-3 years. 

Thank you!!!!  

For the common questions-

Glasses won't help since the damage is the pathways in her brain and not her eyes. 

She can't learn Braille since she does have some vision. 

She will keep receiving vision therapy once a week at school. 

Information I found on line -->

Low Vision

Low vision is a partial loss of sight (also referred to as partially sighted or visually impaired). It is often a loss of visual acuity or sharpness, but may also be a loss of side vision or extreme difficulty with light or glare. Low vision exists when functional vision cannot be adequately corrected with eyeglasses, contact lenses, medications or surgery.

Legal blindness

Legal blindness is a level of visual impairment that has been defined by law to determine eligibility for benefits.

The term Legally Blind identifies an individual whose central visual acuity is 20/125 or poorer in the eye with better vision when wearing best correction.

 

Katie 10/2013

Please pray for Katie's vision. I am thankful for all the vision she has! Yet I am concerned that her vision is not as good as it seems. She can't identify me from across the classroom until I talk. She will assume from 20-30 feet off if a person looks similar, for example calling our neighbor "daddy" as he walked by the house. She gets up close and personal when looking at books or watching tv, or playing on my phone. She will only really watch tv when she is within 5 feet or closer. I used to think she just liked to watch tv from a foot away, but now I think she can only see it clearly within close distances. 

And to clarify her visual impairment the damage is within her brain. So, glasses won't help because the images enter her eyes clearly, but the pathways from her eyes to her brain are damaged, so within her brain the images are blurred. So, the prayer request is that God will continue to repair her brain and restore the connections with her brain. 

We see her ophthalmologist on November 4th, so I will reaffirm that it is ok to let her watch tv within such a close proximity, but at the last visit he said not to prohibit or interfere with how she looks at things. 

Below are cute recent pics of Katie! 😊

Starting a New School Year

Thank you for your continued prayers for my Katie! She is doing amazing!! It has been 10 months since she was diagnosed with epilepsy. My heart still hurts. But I am thankful, every day I am thankful for Katie and her journey. As much as I wish she didn't have to take medicine 3 times a day or worry about more severe seizures or have to fill out the extensive medical forms and so many doctor visits; I am thankful. The seizures she was having at the end of last year have done amazing work of some kind in her brain to  start triggering, rewiring and stimulating her brain in unbelievable ways. Even a few months ago she couldn't tell me anything about her day at school. Day in and day out she said, "I goed on bus. I ate snack." Already this year she is able to tell me names of kids and some insights to life at school. She helps the new kids in class by helping them to where they need to go or holding their hand or showing what to do by example or by simply bossing them around. She is adored by her teachers and the other children look forward to seeing her.
Katie still has a long ways academically to be age-appropriate, but the fact that she has learned shapes and colors and a few letters is a sign that it will come when her brain is ready and able to process the information.

The biggest negative impact of the epilepsy is the weakening and lack of coordination in her left hand. She had just graduated therapy when she got sick. (For those that don't know Katie had a stroke in utero, she has severe brain damage, she has a VP shunt, visual impairment and left sided weakness. In November of last year Katie came down with a nasty virus that triggered something in her brain that caused her to start having seizures.) So, Katie is re-graduating from physical therapy because her gross motor skills are great! She still has 3 Occupational therapies per week to address her left hand. She lacks the ability to supinate her left hand, in other words, she can not rotate her left hand to put her palm up. She uses her left hand often, but it is awkward and weak. She has one vision therapy a week at school. Katie's vision seems totally normal at times, but in a new and unfamiliar environment her vision deficiencies are apparent. In a new place she has difficulty identifying a person 30-40 feet away. But on a typical night at home she can point out the moon in the sky. It varies mostly in unfamiliar environment and with movement. Her eye shaking is called nystagmus and may effect her vision some, but mostly her vision pathways in her brain are damaged. This is why glasses won't help because her eyes see everything correct, but between her eyes and brain the picture is blurred.

We are thankful for many, many countless things!! So as you pray for Katie remember to thank God because her progress is a miracle!! Current prayer requests for Katie are- supination of her left hand, strength and coordination of left hand, continued academic progress, and her vision which is difficult to measure how much it is effected and is inconsistent between environments and situations, and a life-long prayer request is that she shunt will continue to work properly. Every time she complains of headaches for more than a day or throws up or is acting off like she doesn't feel well in the back of my mind I wonder if there is something going on with the shunt. So, there is always a need for continual prayer for a properly working shunt and no infections, since anytime there is a foreign object in your body there is a on-going risk of infection. Also prayers for self-control for Katie and that she would sleep through the night at least 5 nights a week. Sometimes she makes it to 5am before coming into our room, but often I may put her back to bed 1-2 times per night and every morning by 6:30am she is sleeping in our bed and wakes soon after. She is an early riser, but at least she is happy at 6:30 every morning. I thank God for her feisty attitude that has gotten her this far and her joyful attitude that puts her into the heart of SO many people!! Thank you for all your prayers!!
Thank you!!
Thank God!!
Love you and treasure you all!!

End of first school year update

Katie has made good progress do far. With 4 1/2 months of school behind her Katie is making progress in academics. She can recognize a few shapes and most basic colors. She can identify most of the letters in her name. Her left hand has made progress as well. She can open her hand slowly with great concentration. Her left hand is still no where near it was before the seizures started. I do think we have the seizures under control. Next month we go back to the neurologist so we'll see what happens now.
Katie is finally potty trained! Thank you for your prayers!

Answered Prayers

Thank you for your prayers!! Each week I can see improvements!! We are now where I can say she is potty trained. Her left hand is improving each day!! She can open it upon request. She can clap again with a mostly open hand! Katie can hang from the monkey bars with two hands with her full weight for 20-30 seconds. She had been doing that ALL the time before she got sick in November. In the last month her ability to recall information has started to be established. In February Katie could not recall what we did the day before or what she did at school or any ride we went on at Disneyland. But yesterday she told me she painted a butterfly at school. She can tell you a ride she went on at Disneyland. She can recall that we tried to go to the beach last week and that it was too windy to stay, so we went to a playground. She can share her favorite things. Katie can talk and converse with you!! It is amazing progress from just the last few months!! Thank YOU for praying!! I thank God everyday just watching her play!! Katie is a compilation of so so many answered prayers!!
So now I ask you to continue. It is so hard sometimes! I know she has epilepsy and I have seen many of her absent seizures, but still receiving a call from her teacher at school to report that Katie had two seizures yesterday at school is hard to hear. Please please keep praying that the seizures will stop!! Please pray for her left hand to return to at least where it was last November before everything!! Please pray for wisdom for her doctors!! I left a message for doctor but probably won't hear back until later today or tomorrow.
Again thank you!! Katie is a miracle!! She is our many answered prayers!! Her progress is beyond simple medical and therapeutical improvements, but is held in the hand of our mighty, healing, wonderful God!! Thank you!! Thank you God!!

Prayers for Katie

Katie is doing great!! I thank God everyday!!
We saw her neurologist Dr. Gurbani on Friday and overall good appointment. But some prayer requests are-
*For seizure activity to STOP. He believes she is still having small, shallow absent seizures.
*No side effects to medication increase. Last time for over a week after her medication increase she was excessively moody and clumsy.
*Healing for her brain. He said that although she is physically 3 years old mentally Katie is 2 years old. She may be in her 2s for another year or two (possibly more). Her brain damage affects her behavior, complete potty training, learning capacity, speech and even singing. Give thanks for who she is and her progress while continuing to pray for healing.
*So specifically Katie's speech is great overall, but her brain has difficulty processing which leads to choppy sentences, incorrect grammar and sentence structure and slow sentence formation. But don't get me wrong for a moment that I don't count my blessings. Last year she couldn't talk with me or share with me. Now she is telling me her favorite part of her trip to Knott's was riding on the horsey with Daddy. And at Disneyland she ASKED to go on the Carousel. Huge steps!! I am thankful, if her progress stopped today I would be at peace, but I KNOW that God has great things in store for Katie. He will use her speech and personality to glorify Him!
*Too much information for some, but pray for complete potty training. It has been a long year of Katie wanting to be potty trained, but still number two is inconsistent in getting it where it should go.
*Lastly pray for compliance overall.
It would be overall more beneficial for Katie (and everyone) if she would cooperate in school and therapy. Also, mom would be able to retain some more sanity.
Katie will be starting school three days a week this week with her existing 3 Occupational therapies a week and 3 Physical therapies a month. In May Katie will have 4 Doctors appointments. So just continue to pray! Thank you! I appreciate each and every prayer!! Thank you from the bottom of my heart!!

Continuing the miracle

I never know what to call the updates. But Katie's miracle is continuing every day. I was thinking back to this time last year and noting how though Katie had her lovely, happy, bubbly, determined, independent, joyful personality she was still infantile in many ways. She had no preferences or favorite toy, show, ride at Disneyland. She had no excitement or interest going to Disneyland or the zoo or a restaurant. She made the most of where she was but infantile is the best way to describe her. She could communicate wants and needs, but she couldn't converse with you in even simple ways. She had parrot phrases to answer questions but little spontaneous answers.
A month ago if you asked her about her day at school she would say, "I just eat." Then she started saying, "I goed on bus." Now she is starting to tell me some details. But last year she couldn't tell you anything about her day. You can continue to pray for her speech processing. She speaks so well, but her sentence flow is choppy. I don't know if it is brain processing or simply maturity. I am extremely happy with her progress, but any prayers are welcome.
Her left hand has shown some improvement. She is starting to release objects occasionally. She couldn't do this on command at all 2-3 weeks ago. She has such an amazing spirit!! She tries so hard to use her left hand. She will use two hands to eat a cracker just to involve her left hand. She will try to put food in her left hand to eat. She will use two hands to push her baby stroller. Sometimes I can see the fatigue of her left hand come very quickly, she tries but her hand won't cooperate. She tries so hard and my heart aches that I can't fix it. So I keep praying because I have seen the miracle of prayer!! The progress Katie has made in just the last 3 months is unbelievable!! Thank you for being a part of her miracle!! I am so very thankful for each individual prayer!!!

Recap of Katelyn's 3 Years

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I can't believe Katie is almost 3

Katie's neurologist appointment was interesting. He sat and looked and looked at Katie's MRI and CT Scan and compared them side by side with the older scans and he found no explanation for her sudden and significant weakness in left arm. He said the only explanation would be a stroke but MRI and CT scan showed no signs. A virus can cause paralysis, but there was no sign or change in the scans. This wonderful, awesome neurologist doctor stated in the midst of our appointment, "Your child confuses me." Not what you want to hear from your daughter's doctor. But he agrees she is special overall. He upped her anti-seizure medication in case her left hand weakness is from continued seizure activity that we don't see. Please pray for the medication! Pray the side effects are temporary to the increase! She has been more groggy, irritable, and clumsy since the increase. Pray that the medication stops any seizure activity and her left side strengthens!
Katie will start school on January 28th in the Arovista special ed preschool program. Her IEP went great and smoothly! It is not finished yet. Eleven total in attendance- different teachers, therapists and psychologist were in attendance and there were 3 that weren't present. We have to meet again to review OT and PT evaluations and agree on her the goals. The most interesting evaluations was the difference between the psychologist's evaluation in December and the teacher's evaluation last week. In December she was scoring below a two year old level, but a month later she was scoring within her age range. She has made great progress in this last month! Her brain has made miraculous progress. She sings so many songs now and makes up her own songs! It is so cute when she puts other peoples names into the songs!
Please pray for her vision, visual processing, comprehension, speech articulation, general memory and repeating back the days activity. Pray for Katie's transition to school and mom's separation from her. Pray for Katie pre-academics and that she will thrive and grow in school. Her pre-academics were her lowest score because we have been so focused on her physical progress and overall stimulation of her brain and vision. I have no doubts in her potential cognitive abilities, but it is something you can pray for.
Thank you for your prayers!!
Thank You God for your blessing and healing! Thank you God for Katie and her miracle!!
Thank you!!!!